Jeff Folloder: My Journey with CLL

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Topics include: Living Well and Patient Stories

Jeff Folloder, a husband, father, son, and cancer survivor, discusses his own personal journey with CLL and his philanthropic efforts in the cancer community. Jeff explains why he is devoted to cancer volunteerism and the benefits he gets from helping others. Diagnosed with CLL in 2011, Jeff is now in remission. He shares details about his diagnosis and treatment, including his participation in a clinical trial.

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of MD Anderson Cancer Center, its medical staff or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:

Hello and welcome to Patient Power. I’m Andrew Schorr.  We’re visiting with a CLL Patient, Jeff Folloder from Houston, Texas.  Jeff you’re now a leukemia survivor, living with leukemia but, fortunately, you’re doing quite well. You’ve been devoting a lot of time to being a volunteer to help other cancer patients. Why are you doing this?

I suppose the easiest way to answer that is that’s the way my parents raised me. Both of them told me that if you get anything from the community that you live in, you’re duty- and honor-bound to give it back.

And me, going into remission with cancer was a gift. Some people would call it a blessing. It was absolutely one of the most important things in my life. I feel like I’m honor-bound to share that with other people and let them know that cancer does not equal death every time.

Andrew Schorr:

So you meet people often who are newly diagnosed with cancer, and they are terrified. How do you calm them down? What do you say?

Jeff Folloder:

Well, the first thing I tell them is breathe, because that’s what most people who have just been diagnosed stop doing. They stop breathing. Everything comes to a crashing halt in their life, because they don’t know how to react.

They don’t know how to respond. They forget how to breathe. And I tell them, you’re a human being, and I’m a human being. I’ve been through this, and I came out the other side. Tell me what’s on your mind. And we’ll work, we’ll go through it together.

Andrew Schorr:

What sort of transformation have you seen in people as you’ve helped them over time?

Jeff Folloder:

I see a lot of people learn how to relax all over again. A woman that I was working with had a problem with her kids after she told her kids about her CLL diagnosis. The kids had kind of pushed back from her. They weren’t as responsible. They weren’t as helpful. They weren’t as engaged in the family aspect of life.

And I asked her one simple question. Did you tell the kids that this isn’t hereditary? And she said no, why? You might want to let them know, they’re scared too. They’re scared that this is going to be part of their own lives, and you need to let them know what’s going on. She did that. She called me up. She was in tears, and she told me, how did you know?

And I said, because I have kids, and I went through the exact same thing that you’re going through. Tell me what’s wrong, and I’ll tell you how I dealt with it. It might not be the right way to deal with it, but I can tell you that it’s a shared experience.

Andrew  Schorr:

Someone’s that’s watching may also want to become a cancer volunteer. How did you start, and what would you say to others?

Jeff Folloder:

The way I started was by contacting an organization called CanCare. CanCare is an interesting volunteer organization that matches cancer survivors and caregivers—one on one with people who are going through the exact same form of cancer, which I thought was a very unique approach.

They give you specific training, volunteer training, life coaching training, and it turns it into a way to connect with other people in a positive way. It was a life-changing experience for me, and I highly recommend it.

Being a cancer volunteer is something that makes me feel better, and so I tell people it’s all about me. When I show up at one of the hospitals and spend time chatting with somebody who hasn’t had a visitor in a month, when I’m able to help this person get one or two smiles on their face, it makes me feel better.

It’s a rush. It’s a high. It’s making me feel more complete. This is doable, and it’s part of my message to other people. You’ve got to do it. You just have to do it.

Andrew Schorr:

Jeff, let’s go back to when you were diagnosed. You decided to become your own project manager.  How come?

Jeff Folloder:

When I got diagnosed with leukemia, it was like getting hit with a baseball bat, simultaneously in my head, my gut, my back, everywhere.

Everything was flying at me a hundred miles per hour, and I felt like I was being required to make decisions instantaneously that I wasn’t capable of doing. I just, I wasn’t capable of assimilating that much information that fast. But what I was smart enough to do at the time was realize that I had options.

I live here in the Houston area, and part of my family works here at MD Anderson Hospital. I knew my diagnosis wasn’t going to change, but I did know that I had access to maybe options that my current doctor didn’t know about. So I leaned on my aunt, and I said I need some help. Can we talk to folks here at MD Anderson Hospital?

And they got, they got me set up here with an appointment. I did the appointment with Dr. Keating. Dr. Keating picked me up out of the chair and gave me a giant bear hug, like he does every single one of his patients. And he told me, don’t be mad at your doctor.

FCR, which is what they wanted to start me on immediately is the gold standard for last year, not today. And I had options. I went through a treatment program eventually. I’m in complete remission. Dr. Keating didn’t lie to me. I made myself aware of other options.

I’m not sure that there’s, that that’s a standard mode of thought for everybody who gets diagnosed with cancer. And I guess that’s one of my personal missions is to make sure that people become their own patient advocates, that they ask questions. That they say, slow down, I need to understand what you’re doing.

Andrew Schorr:

Even if that means seeking going to another doctor or seeing a specialist in that illness? 

Jeff Folloder:

Absolutely. To me, it’s almost an absolute. You’ve got to be sure that you’re comfortable with what’s about to happen to you. One doctor may not be the sum total of that information for you. Two doctors, three doctors, four doctors if you, however many it takes for you to be comfortable with what’s about to happen to you.

Andrew Schorr:

Jeff, you’ve been in a clinical trial for a drug, a monoclonal antibody, called ofatumumab (Arzerra). Why did you decide to do that to be in a clinical trial? How has it worked out?

Jeff Folloder:

Dr. Keating recommended ofatumumab as the treatment that was most likely to achieve the best results for my particular flavor of CLL. And I think that’s a really important concept to get across. CLL is not one disease. It’s dozens, hundreds, maybe even thousands of diseases.

And the way treatment works today, it’s almost customized for your specific diagnosis. It’s not the shotgun approach anymore. Dr. Keating believed that ofatumumab was going to achieve the best result with the least amount of side effects for my particular case. I trusted him.

I absolutely did my own research on the Internet and Google and Patient Power, and every other website that I could absorb, and I agreed with him. We set up the program. I went through two months of ambulatory transfusion center visits.

I came out the other side, and now I qualify for not just complete remission, but the coveted MRD status, minimal residual disease. If I went and visited a general practitioner, got my blood tested, if they didn’t know I was a leukemia patient, they wouldn’t see it in my blood. That’s pretty amazing stuff.

Andrew Schorr:

Jeff Folloder, thank you so much for being with us. We’re delighted you continue to do well and knock that CLL back.  I'm Andrew Schorr. Remember, knowledge can be the best medicine of all.

Please remember the opinions expressed on Patient Power are not necessarily the views of MD Anderson Cancer Center, its medical staff or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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Page last updated on October 27, 2015